DMD Care UK explores next steps for patient care

On 29th February, Rare Disease Day, we were pleased to be part of the 2024 national meeting for DMD Care UK. More than 130 clinicians and 25 patient representatives are now involved in DMD Care UK, giving their time and expertise across no fewer than 13 working groups...

Vamorolone approved in the US

The US FDA (Food and Drug Administration) has approved Vamorolone for the treatment of Duchenne muscular dystrophy in children and adults aged 2 and over. It will be sold under the brand name Agamree and is expected to be available in the US in early 2024. This...

World Muscle Society awards 2023 DRF prize

The World Muscle Society has once again awarded the Duchenne Research Fund prize at the annual WMS international congress, supporting a talented researcher in the Duchenne arena. The winner at the 28th congress in Charleston, South Carolina, USA, in October 2023 was...

DRF-funded project aims to screen for neurobehavioural issues

The Duchenne Research Fund is pleased to share an update on the Parent Project Muscular Dystrophy (PPMD) project we funded in the United States to address neurobehavioural and psychosocial issues in Duchenne. In 2021 we awarded an £80,000 grant to PPMD to support its...
Five-year grant to Dr Michela Guglieri: outcome report

Five-year grant to Dr Michela Guglieri: outcome report

We are delighted to report the outcomes of our grant for a Clinical Trials Lectureship. The grant, which was supported by a consortium of seven UK charities, saw the Duchenne Research Fund joined by Action Duchenne, Alex’s Wish, Duchenne Now, Duchenne UK, Harrison’s...

DMD Care UK: Psychosocial Programme now recruiting

The Duchenne Research Fund are pleased to announce that the University of Newcastle is now recruiting for a clinical psychologist to work with Duchenne patients and their families as part of the DMD Care UK Psychosocial Programme. This clinical and research-based role...

Santhera and ReveraGen share latest vamorolone study results

We are pleased to share the announcement from Santhera Pharmaceuticals and ReveraGen BioPharma of new topline results after completion of the VISION-DMD study at week 48. VISION-DMD was a pivotal double-blind Phase 2b study designed to demonstrate efficacy and safety...

DRF awards £640,000 for vital psychosocial project

The Duchenne Research Fund is delighted to announce that we are awarding a £640,000 grant to fund vital psychosocial care and research as part of Duchenne UK’s DMD Care UK programme. We are so pleased to partner with Duchenne UK on this important project. The...

DRF funds Duchenne clinic at Great Ormond Street

We are pleased to share that we have awarded a grant of £35,000 to Great Ormond Street Hospital to establish a dedicated clinic for children who are non-ambulant (no longer able to walk). The grant supports the post of Senior Physiotherapist Nicola Burnett (pictured)...